On Tuesday I learned that I won’t be getting the trial drug. I qualified for the trial but lost the toss for the new treatment. I will be in the control group. I will be getting the standard of care, Taxotere. I don’t know how many cycles. But, it’s two weeks on, then one week off.

This makes my trial results 50-50. I got it the last time and missed out this one. Once I start a program, I will be disqualified from others. Hopefully, this will be effective on it’s own. It will at least be good to be getting treatment again. I am getting an occasional cough. My chest pains and back aches are easing. My earache and headaches continue. I will go through another brain MRI. It been about 3 months since the last one. It would be nice to know what’s going on.

So much has changed since last Tuesday. So much it feels like it’s been weeks since we got the bad news.

I’d expected to get about another year on Tarceva. Time I’d begun to count on has been snatched away. It’s devastating. We’ve now been through this a few times but it doesn’t get much easier. Lots of tears. More uncertainty. Another crossroads.

Since getting the news, I’ve been either working late or exhausted or both. No opportunity to blog. And there have been the new pains. Because of severe back pains several days in a row, I had MRI of my spine last Saturday. But, the results weren’t definitive. That can happen with most of these tests from time to time.

Then over the weekend I started getting more intense chest pains. By Monday morning it was constant and I was referred to the ER. I doubted it could be a heart issue, but I have been on a lot of different drugs with various side effects. There was also pulmonary emboli to rule out. For this, I had another chest CT. No PE. But, there is further noticeable disease progression – and in just two weeks. Not good – but I guess not entirely unexpected. So it’s pain management for now. And wait. The day at the ER was exhausting and aggravating. It was the entire day! I felt ignored and forgotten much of the time. Ken would have come in an instant. But, I insisted he get through his meetings. We were in phone contact as much as possible which helped. But, I learned my lesson. I won’t go it alone again. 

Dr B is recommending my next line of treatment be Taxotere along with another trial drug. It doesn’t have a catchy name yet – just a designation of letters and numbers. To qualify, I have to wait 3 weeks from the time I stopped taking Tarceva. Three weeks without treatment. Three weeks allowing the cancer to progress. The hope is adding the trial drug will squeeze more success out of the treatment than without it.

To make chemo easier I will get a port implanted. This will make treatments, blood draws, and other tests (with IV contrast) much easier. I know it’s the right thing and I am ready for it. But it doesn’t mean I am looking forward to having a foreign object in my chest with a tube resting inside a major artery. The procedure will be done next week. Then, if all goes well, chemo starts on the 17th.

In the meantime, I had a bone scan. It was a routine follow-up to the trial I’d been on. Dr B thinks it might also give some insight into my chest pains. We’ll know tomorrow.

I learned today the Tarceva is no longer working. Several new small tumors have appeared. There is good news. My abdominal tumor has not reappeared and my lymph nodes have not swollen again with cancer cells.

Needless to say, this has been a long, hard day. I am exhausted physically and emotionally. A good night’s sleep will get me up and going again. I will write more later.

Dec. 17, 2008

After the CT, an ultrasound was scheduled to learn more about the nodules. This provided some useful information about their size and location, but also other ambiguous information. The next stop was the Endocrinologist. That involved a needle biopsy – actually several of them. And, once again, ambiguous results. This is not unusual for thyroid issues.

The next step is to make a decision to watch it by repeating the ultrasound or to biopsy it by removing it surgically. Next we will meet with a surgeon to learn more and then make a decision. I am not all that worried. The chance it is cancerous is small and, besides, thyroid cancers are not a big deal all things considered. They grow slowly and can be easily monitored and managed.  I have a brain MRI scheduled for next week and the week after, my routine CT for chest, abdomen, etc.

Based on how I am feeling, I think the medications are effective and I am doing well. Of course, it’s always great to get confirmation. The side effects are lessening. The hair loss has slowed to a normal rate plus I’ve become accustomed to having less of it. I am managing infections better and scarcely have rashes. As I try to do more, I notice my fatigue more. I simply can’t do as much as I used to. But, I am hoping that excercise will help to turn that around.

I still worry about each new ache or pain, but this comes with the territory. Dr B and nurse Erin,  are patient and supportive.

This week, I am on vacation. Ken and I are living on board a boat docked at Shelter Island and learning to sail it – all 42′ of it. It’s intimdating, but exciting. The weather is lousy. The rain doesn’t keep us from going out except when it’s too heavy to see. On deck, we get cold and wet with the limited gear we have. We intend to be fairweather sailors and didn’t plan on getting foul-weather gear. We now have bright yellow slickers but nothing to keep our feet dry.

Preliminary results of the PET scan indicate my medications are still working. Yeah!!! This is a HUGE relief. For now, I will continue on Tarceva and the trial medication.

I often get questions about the differences between a PET and CT scan. The simplest way I can explain it – as I understand it –  is PET scans indicate tumor activity while CT scans are a series of xrays that show shapes of organs as well as any abnormal objects. These can indicate a tumor, infection, or scar tissue, etc. The abnormalities are compared to sites of high metabolic activity on a PET scan to determine if any might have cancerous activity. ANd, BTW… a CT scan and a CAT scan are the same thing – Computed Tomography. PET stands for Positron Emission Tomography.

Monday, January 5th we saw Dr B for the test results and my routine exam. The brain MRI from the 22nd was clear. Still no explanation for the ache near my ear… but at least it doesn’t look like anything serious. Now for the not-so-good news. My CT results didn’t look good, at least the radiologist’s report was not good. It indicated the tumor is progressing – not a lot – but any progression is not good and reason to discontinue my current treatment. It’s possible it is an error. I will have a PET scan to get more information. The CT will also be formally reviewed for clarification. The PET scan is tomorrow morning. The two scans will be compared. I should know more by Friday.

I expected and hoped to get at least at year and a half from Tarceva and possibly more. It’s been very effective so far. My symptoms remain good. Hopefully, the PET scan will give us great news.

Ken and I got the CT scan results on Wednesday morning. The results are much better than expected. Yeah!! Dr B is now measuring the tumor in millimeters rather than centimeters. It’s not only smaller, it’s once again opaque looking instead of the dense blob it was in early July. It’s unbelievable!!

My hopes were kept in check by various little aches and pains in my chest and neck that come and go. Obviously, this is a poor indicator of my progress since the tumor continues to shrink and my lymph nodes remain normal in size. I am also encouraged because my abdomen remains clear and has since I finished chemo in May.

The tumors in my bones continue to get added treatment with Zometa. The improvement in the main tumor means my bones should be healing just as well. Dr B does not think the neck issues are related to the cancer. But, I’ll go through a neck CT on the 18th to be sure. I think it’s mostly for my peace of mind. Reducing anxiety being a part of treatment. : )

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